The days after

Flowers and cards arrive everyday. Wedding invite replies arrive (we have postponed our wedding) the phone keeps ringing, and life carries on around me.
It’s unbelievably tough to go from doing everything for someone to them suddenly not being there.
The house is so empty, and there is nothing to do. I get up, move from my bed to the sofa or I lie in Lennon’s bed. Thank god for Lennon being at Keech, Ian and the girls.

On Tuesday we returned to Addenbrookes to collect Lennon’s death certificate. Because Lennon arrived at Addenbrookes, went to theatre and died all within 12 hours, his death had to be reviewed by a coroner. This meant that it was going to be quicker and less hassle for us to register his death in Cambridgeshire. It was difficult to go back. The only times we had ever been to Addenbrookes was when Lennon was in PICU. Plus we had last left there only a few hours after Lennon had died.
As expected, the causes of Lennon’s death were septic shock, bowel necrosis and Volvulus.
Holding your child’s death certificate in your hands is a surreal feeling. To be honest though, every minute since we left home on that Tuesday night has been surreal. Almost like a dream, like I’m watching myself.

We visited the Funeral Directors to arrange Lennon’s funeral. We decided on a plain white casket for Lennon and cremation. The service will be held at a crematorium and we will celebrate Lennon’s life afterwards – share stories and send balloons to the sky.
We also discussed with the girls what they would like to put inside the casket with Lennon for his final journey and Isla has decided that she would like to keep Lennon’s precious ‘cuddles cat’ to look after for him.

We have been in and out of Keech all week to spend time with Lennon. I find this comforting – I’m happier when I’m close to him.
We had asked if they could take some professional black and white photos of Lennon in his page boy outfit with his favourite toys.
They are beautiful pictures, Lennon looks so smart and peaceful. They also took some shots without his face in, with the thought that we could add them to our wedding album when we finally get married and he could still be a part of our wedding album.
The girls at Keech also took hand and foot moulds and fingerprint moulds. They have made hand and foot prints on canvas, and even made canvases that we can add the girls hand and feet prints onto, alongside Lennon’s.
I want as many memories as possible. I don’t want to forget a single little thing about my little soldier – that is now my biggest fear. Forgetting.

Our beloved community nurse came round for the last time. This was hard for me. The people that came into our home and our lives to help us, became my friends. The time and energy I put into caring for Lennon meant that I rarely saw my friends, therefore nurses, doctors and carers became my friends.
Nic had been a part of our lives since Lennon was a baby, she had seen the girls grow up. She had witnessed Lennon’s changes and improvements over the years. I loved sharing Lennon’s achievements with her, and I felt her pride in him.
She had become a pro at taking blood from a fast moving target – She had narrowly avoided pricking herself when accessing Lennon’s port in the last few weeks!
She had helped get us to Florida and heavily contributed to a hefty medical file that travelled everywhere with Lennon. She taught me CPR and how to take blood, helped with bowel washouts, and filled my bin up with medical waste!
But above all, she listened to me and my worries, calmed me down when I panicked, and talked me round when I sobbed down the phone.
She knew Lennon so well, and she knew that the Lennon on paper was not the ‘real life’ Lennon.
She spent almost 3 hours with us, talking over that day and the last 10 years. I didn’t want her leave.

Nic – we wouldn’t of got through this without your support, we wouldn’t of had all those years of no hospital stays without you. I can never thank you enough, and I will never forget what you have done for us all.

On Thursday afternoon Lennon’s casket arrived at Keech.
I broke down as soon as we walked into the room. My baby boy in a white coffin. It seems so much more ‘real’ now. The words inscribed on the lid made me sob. The way the girls have placed his toys and Mickey blanket on top and the love that has gone into making the room look so special is touching.
Ian and I sat with him and noticed how long his coffin was. He had grown so much taller in the last few months.

I feel so numb. The pain in my chest is still there, and the sorrow and sadness feels deeper every day.
I look forward to bedtime as I know for that one second when I wake, its like all this never happened and Lennon is still here.
Getting through every day feels like a battle, and when the day has ended, it is just another day without Lennon. He has left such a huge gapping hole in our lives, that I can never envisage being even partly filled.
I miss his baby soft skin, his thick hair with the coarse patch at the back, his clicking and quacking. I even miss the bruises on my legs, which have already faded to nothing.
I sit and watch videos and look through photos, in the effort to keep him alive in my head. And I wonder how will life carry on without Lennon??

Beautiful writing Nikki. I have tears reading this but I know for you and the family this heartache will stay for years to come. You both are ultimate parents, you gave your absolute all for Lennon and the things you have been through most of us cannot even begin to comprehend. Thanks for sharing all your stories over the years, we’ll all remember Lennon. Nikki, he is still close to you, looking down and so proud of you all xxx

Thank you so much for writing this. It is beautiful in its rawness and it quite possibly the hardest thing I’ve read in a very long time. I have often wondered, had the roll of the dice gone the other way for us, what would have happened next. It is the part I can’t let my mind wander to because it’s something that my heart just can’t comprehend. And you have been brave enough to take us by the hand and show us just a little of the enormity of your loss. And as much as it tears me to pieces I am really, really grateful for your honesty, so thank you.

I have been so aware of how life just marches on and it must seem so cruel that it does not stop to grieve with you. I’m sure I’m not the only one who has found a little space open up in each happy moment I now spend with my children where I am mindful of the privilege it is to be able to enjoy the passing of time with them. It means that Lennon is a part of most of my happy moments these days. When I find myself thinking of him I find myself just looking at the moment I am in slightly differently. It might make me squeeze my kids harder (even when they look mortified that I am showing them affection in public), or I might choose to climb into bed with Dominic when he can’t sleep and just enjoy feeling his breath on my neck as he settles into me rather than going straight down stairs. It sometimes even makes me throw myself about like an idiot doing the most embarrassing dance moves I can in front of the teens and surrounded by crowds of strangers just to see their smiles and to hear D’s belly laugh.

Time is indiscriminately callous in the way it marches on, but it doesn’t mean that Lennon isn’t part of our present and future x

I read those beautiful words you’ve written with tears down my face.i feel so sad and helpless that I can’t take he pain away. You will never forget him Nik he’s tattooed everything about himself in your heart. A beautiful little man that’s given so many memories to so many of us. He will always be loved and never forgotten.
Love you little man xxxxx Gail